My Introduction and Test Results

[Rainy]

Hi All,

I want to introduce myself and share some of my story. It's rather lengthy. I became debilitated with a cascade of symptoms following a bicycle riding accident in spring 2015 that broke my elbow and required surgery and a metal implant. My symptoms have included chronic pain (spine, bones, nerves), body and face vibrations, other parasthesias, gastrointestinal issues (reactive hypoglycemia, constipation, motility issues - too fast, too slow, reflux, abdominal pains, what I think is splenic fixture syndrome), postprandial hypotension, orthostatic intolerance (feeling like I have hypoxia; the world looks like it's been smeared with vaseline, my perception is all out of whack, my coordination is off, I'm shaky and weak, and feel like a fish out of water choking and gasping for air), sudden onset weather extreme and barometric intolerance (makes all symptoms worse to point of being bedridden at times), severe heat exhaustion, severe exertion intolerance, inability to go from buoyancy of pool to supporting own body weight without near collapse and physical anxiety sensations, episodes of vertigo/rocky boat sensation, vasovagal responses with near syncope, recurrent sinusitis, head pressure, tinnitus, lower leg pain, chemical hypersensitivity/intolerance, sleep disturbance, severe problems with sleep to wake transition, severe brain fog/derealization (feeling half comatose), and on and on...

I was finally diagnosed with POTS/dysautonomia in February, by a primary care doctor, after a series of vitals that included supine (pulse 74) and standing (pulse 94), and remaining standing for several minutes (pulse 111). My blood pressure did not fluctuate much during this test, although it fluctuates significantly when I test it myself as noted below. I wore a cardiac monitor for over a week that showed my heart rate going up to 158 upon rising in the mornings and going down to 48 while sleeping. I have a blood pressure cuff at home that shows my orthostatic blood pressure to vary from 77/52 (just after a meal) to 85/55 (just before graying out) to 92/55 (a typical morning) to 110/65 (mid-day) to 138/90 (in the midst of a panic attack). I have documented these autonomic changes, and have noticed that I no longer sweat, although we've had days over 100 degrees F where I live. I have been in the emergency room a few times and diagnosed with heat exhaustion (I drink 64-80 oz of water per day, and often mix it with half G2 or add 1/2 tsp of salt per 32 oz). 

What concerns me is that I just had autonomic testing with NORMAL results. Heart rate response to deep breathing and valsalva maneuver, as well as tilt table test were normal. The report I received states that "there is no evidence of orthostatic hypotension or tachycardia." Furthermore, my QSART report states "there is no evidence of a postganglionic sympathetic sudomotor abnormality like that seen in autonomic/small fiber neuropathy." Multiple symptoms occur for me every day, but they vary. For example, if I avoid exertion, avoid prolonged standing or sitting, the weather is fair and steady, and I eat tiny meals, I might have a fairly good day of low-normal blood pressure, no heart racing, and no sense of collapse (although I will have other symptoms). Has anyone else had NORMAL test results and still been diagnosed with some form of dysautonomia? I'm wondering if I have something more like CFS with some dysautonomia features. I'm still waiting on a few labs and the results of my skin biopsy. Thank you.

 

 

[corina]

Hi Rainy, welcome to DINET! My tests have never been normal but I know from others that symptoms may wax and wane so I think it's possible that you could have had a good day when tested. If you see your doctor to discuss the results you may want to point out your bp measurements as they certainly aren't normal and do indicate there's something going on whether it's POTS or not!

[Kaitlyn]

Hi Rainy -

i haven't had any normal test results but mine have ranged from mild to much more severe depending on the day. The symptoms vary from day to day and moment to moment with Dysautonomia. I'm curious, were you on any medication when you had your tilt test and other autonomic testing? Also, some can show mild or no abnormality and you can still have symptoms. For example my qsarts only showed mild abnormality on my left foot ('please correlate clinically' note attached) but I KNOW that my body isn't regulating temperature correctly. So I don't really care what the test said.

wishing the best and to get answers soon!!

kaitlyn

[Katybug]

When I was tested, the nurses in the room conducting the test kept saying I was tachycardic. They called the doctor in several times. My HR had gone from 70's to 140's and stayed there the entire 45 mins. I was also symptomatic the whole time although didn't black out. Before I left the attending doc said to drink a 32 oz Gatorade and a liter of water daily and to follow up with my own cardiologist within 2 weeks. When I got to that appt, she said the report said everything was normal. I thank my lucky stars those nurses were telling me what they were seeing because I told her and asked her to get the raw data and evaluate it herself. Sure enough, when she did that, I had a POTS diagnosis  (and a very mad cardiologist that the other doc had not properly evaluated the data.)

This issue has come up before. I don't know what your raw data showed but if you haven't seen that information,  you may want to get a copy and review and discuss it to make sure the report is correct. 

Also, I often don't have "qualifying numvers" of POTS when I'm at my doctor's office and he does a poor man's ttt but then other times, my hr shoots up and it's quite obvious I have POTS. 

[Rainy]

Thank you for your responses, Corina and Kaitlyn. It's good to know that it's common for symptoms to vary and wax and wane. I had stopped taking all the medicines on the list for the amounts of time I was supposed to stop taking them before I had the autonomic testing done, so they should not have interfered with the results. My QSART response at the foot was "borderline" but I've been diagnosed with heat exhaustion on three occasions so I know my body isn't regulating temperature correctly either. Hopefully my skin biopsy results will provide more answers. I also just received the results of an EBV PQR test and it's positive for EBV DNA. I just read that virus can cause sensory and autonomic neuropathy as well. I'm waiting to follow up with my doctors about it. 

[Kris4444]

I went to Mayo in 2011 for ANS testing. All tests were normal with the exception of high norepinephrine and dopamine. In 2015 I went to a new, local autonomic nervous system testing center and was seen by the neurologist there. My tilt table, valsalva and other tests were all abnormal and I still high very high levels of NE and dopamine. I was relieved and was finally able to get help for the symptoms that had been plaguing me for years! I'm still struggling to some extent and I don't have all of my questions answered. This doctor was supposed to send my blood to NIH for further testing but never followed up even though I stayed on them for a while. I get IV fluids at home now and a beta blocker has really helped.  I hope you get some answers. Don't give up until you do!

[Rainy]

Thanks Kris. It's helpful to know that test results can be inconsistent. I wish someone would do my upright NE and dopamine. An integrative MD did a Pharmasan Neuroscreen test on me that showed elevated dopamine in my urine (normal NE). I've also had 24-hr urine catecholamines that were within normal range, but I've never had upright serum levels checked.